“CDC Lyme Group Violates Law with Preferential Treatment of IDSA,” Advocates Say

Why does the CDC, a public agency tasked with protecting the health of US taxpayers, promulgate the IDSA guidelines as policy, particularly when it can be demonstrated that the guidelines authors disallow, ignore, or reject a very large body of scientific evidence that contradicts their narrow view of this disease?

The Centers for Disease and Control Prevention (CDC) group responsible for policy on Lyme disease violates federal law by extending preferential treatment to the Infectious Diseases Society of America (IDSA) says a petition created by a group of Lyme patient advocates. The petition to End Preferential Treatment of the IDSA Guidelines for Lyme Disease was filed with the CDC’s Bacterial Diseases Branch on Wednesday, October 14.

The petitioners are exercising their First Amendment right to petition the government for “a redress of grievances,” along with a more specific right added by the Administrative Procedure Act, which provides “interested persons” with the “right to petition for the issuance, amendment, or repeal of a rule.”

The petitioners claim that “because of restrictions imposed by the critically flawed IDSA guidelines promoted by CDC, thousands of chronically ill patients are harmed by misdiagnosis and denial of medically necessary treatment. CDC’s failure to provide equivalent exposure for more recent guidelines from the International Lyme and Associated Diseases Society (ILADS) compounds the harm by omitting information about evidence-based treatments that could help these severely ill patients recover from this devastating disease.”

In addition, these advocates want to know, “Why does the CDC, a public agency tasked with protecting the health of US taxpayers, promulgate the IDSA guidelines as policy, particularly when it can be demonstrated that the guidelines authors disallow, ignore, or reject a very large body of scientific evidence that contradicts their narrow view of the this disease?”

“CDC has been breaking the law for more than a decade by providing preferential treatment to the Infectious Diseases Society of America and promoting the critically flawed IDSA guidelines for Lyme disease, which are nine years out of date and non compliant with federal standards, while omitting information about competing guidelines from ILADS that are compliant with current standards and contain details about treatments that could help thousands of chronically ill patients regain their health.”

CDC’s rule regarding the IDSA guidelines is published in the following statement on the CDC website, in answer to the question: “Why does CDC only link to one set of treatment guidelines?”

“CDC believes that the Infectious Diseases Society of America (IDSA) guidelines currently represent the best available synthesis of the medical literature on the diagnosis and treatment of Lyme disease. The IDSA, with input from CDC experts and other doctors, has developed and published Lyme disease treatment guidelines.”

The ad hoc group of Lyme patient advocates who collaborated to produce the petition wants to know: “How can these outdated, critically flawed guidelines represent the best available synthesis of the medical literature?”

The petitioners claim CDC’s preferential treatment of IDSA violates the Standards of Ethical Conduct for Employees of the Executive-Branch, which states:

“Employees shall act impartially and not give preferential treatment to any private organization or individual.”

The IDSA guidelines are up for revision, and the health of thousands of Lyme patients depends on IDSA getting it right. Advocates are gravely concerned that given CDC and IDSA’s track record history will be repeated and untold numbers of Lyme patients will continue to suffer unnecessarily.